[Macophile]

I don't know if this is the right thread for me or not, but I have had pain from peripheral neuropathy (This they think is somehow related to an Auto-Immune Disease) and Fibro for 2.5 years now and I am getting to the end of my rope with just "dealing" with it. I can barely walk around the block without crippling myself for the rest of the day if not the next one or two sometimes. I can't fall asleep at night w/o having someone holding/rubbing my feet. My pain clinic Dr. is not the nicest person my latest appointment with him was yesterday and all he could say was "I really don't know what you expect be to say." and "everyone else with your problems has the exact same issues" and as the kicker he basically told me I should join a support group instead of seeing him I guess, as he didn't give me any follow up apts. This is better than what he said when I last saw him a year ago "Don't bother coming back unless you want to get the steroid injections"- which I did not want as the previous ones, while dif. did not really help.

The thing I am wondering is how many people with Fibro and Peripheral Neuropathy are without any drugs for the pain?
I am on Lyrica, Gabapentin, and Baclofen for the Peripheral Neuropathy and on Methotrexate for the Auto-Immune issues. I think it would be a good idea to add something in to manage the pain since it is not controlled, but I seem to be meeting dead ends. So I am wondering if it is because of the type of problem that I have that he is not giving me anything or is it something else? I can't imagine having to live not being able to do most of the things I want or need to do (like to to school, or fall asleep).

I'm sorry for the rant. I guess I am just looking for some feedback.

[finz]

Well, here's the thing.......there is the school of thought out there that narcotics don't work on fibro and nerve pain.

Those are 2 of my issues and I can tell you that narcotics DO work for my nerve pain.

Unfortunately, I've had similar issues with pain clinics in my area. They only want to do injections and if that doesn't work for you then it's just tough luck.

The more you 'doctor shop' looking for someone to help, the more it looks to them like you are just drug seeking, but what else can we do ?

[naif]

Originally Posted by Macophile

I don't know if this is the right thread for me or not, but I have had pain from peripheral neuropathy (This they think is somehow related to an Auto-Immune Disease) and Fibro for 2.5 years now and I am getting to the end of my rope with just "dealing" with it. I can barely walk around the block without crippling myself for the rest of the day if not the next one or two sometimes. I can't fall asleep at night w/o having someone holding/rubbing my feet. My pain clinic Dr. is not the nicest person my latest appointment with him was yesterday and all he could say was "I really don't know what you expect be to say." and "everyone else with your problems has the exact same issues" and as the kicker he basically told me I should join a support group instead of seeing him I guess, as he didn't give me any follow up apts. This is better than what he said when I last saw him a year ago "Don't bother coming back unless you want to get the steroid injections"- which I did not want as the previous ones, while dif. did not really help.
The thing I am wondering is how many people with Fibro and Peripheral Neuropathy are without any drugs for the pain?
I am on Lyrica, Gabapentin, and Baclofen for the Peripheral Neuropathy and on Methotrexate for the Auto-Immune issues. I think it would be a good idea to add something in to manage the pain since it is not controlled, but I seem to be meeting dead ends. So I am wondering if it is because of the type of problem that I have that he is not giving me anything or is it something else? I can't imagine having to live not being able to do most of the things I want or need to do (like to to school, or fall asleep).

I'm sorry for the rant. I guess I am just looking for some feedback.

Pain management clinics are funny they want you to take a variety of drugs
to help manage your problem ignore the side effects of all these meds and
essentially avoid prescribing a Pain Pill i.e. narcotic which usually serves the purpose without the quantity of these other meds, i have nerve impingments
herniated discs djd stenosis early kyphoscoliosis ive been prescribed hydrocodone and nsaids. therapeutic measures, my pain specialist prefers that i take neurontin for the radiculopathy 3x per day and an antidepressant
to sleep doesnt care that they make me sleep and less alert all day also weight gain
just seems to think its better than taking the narcotic which actually does make me feel better and functional w/o the side effects im not a surgical candidate so i guess its a rest of my life issue. personally I think you should have a say in determining what the quality of your life consists of and if pain medication helps you to manage then thats what you take not a multitude of
various meds which leave you feeling pretty bad off also i recently read a study which showed that peop[le with nerve pain manage better with prn narcotics find out why your physician is refusing to prescribe you any.

[Dmom3005]

I have no true answer wish I did. The thing my doctor has added that
helps ishydrocodone-APOP. Now it will be my primary that will object
to this he doesn't want me on it all the time.

But right now I'm managing to take it less than its prescribed, and that is
fantastic. I can take it up to 4 times a day. Usually only need it twice if
that.

I take it for sleeping mainly.

Donna

[lefthanded]

I use a combination of norco and medical marijuana . . . but it still doesn't always handle my pain. Like right now, my feet are firing on all cylinders, alternating between cramping, stiffness, heat, and stabbing-shooting pains. I alternate between Dansko's, with their great support, and Keens, which are flatter and allow more foot flex . . . and use insoles in my athletic shoes. But like you, at the end of a day on my feet I am in pure torture. I can't sit still, have to pace, and have to use so much "med" to get comfortable to sleep that waking can be tough. I also have developed a type of yoga-style breathing to help me when it gets intense.

I am with a pain clinic and the doctor there likes patients to read "Full Catastrophe Living" which teaches mindfullness to reduce stress and pain. The idea is to not resist pain when it arrives, but acknowledge it and pay attention to it.

I don't know about you, but I regularly talk to my feet. I used to do some pretty strenuous backpacking and hiking, and some mountaineering . .. my feet have carried me to some of the most heavenly places on Earth! I am very sad that those days are behind me, and no matter what others say to encourage me, I know I will never see a glacier up close and personal again! I will never again feel the hollow give of the rain-forest floor built of years of fallen trees, needles, leaves, and decay . .. or feel the moment that my crampons grab the ice to keep me from slipping. I took great care with my feet, inpsecting them for blisters and callouses, and learning to pad them with moleskin, tape and even second skin if I did have a blister. But I always kept going. I miss it terribly, and even mourn the places I wanted to, but will never see . . . and I talk to my feet about it . . .

My last trip to the beach was horrible. I slipped off my shoes and headed out onto the sand to feel the pounding surf . . . and ow! I was in agony! I had to put my shoes back on . . . forgoing the most wonderful experience we can have . . . our bare feel on sun-warmed sand, and the feel of the surf wshing over them. I was in tears from the pain, and the pain of not being able to enjoy what had been for years, the most relaxing and wonderful sensation on Earth.

So I am working on finding a way to endure/live with/accommodate my pain. I, too, have an auto-immune illness, Crohn's, and between the two life has become a great challenge. I hear you! I recommend that you find several things that might work alone and together . . . and not all of them requiring a prescription. I am trying to wean down to the bare minimum of prescriptions I must take: they are both expensive and very taxing on the liver. And I hate pain-killers. I hate how they make me feel, and I hate the way we often have to beg for them.

I do a LOT of controlled breathing. I found music that I can let my breath rise and fall with, concentrating on a strong exhale and letting my body force the inhale. But it is allowing smooth breathing, instead of the breath-holding, jerky, panicky stuff we do when the pain hits, that usually allows me to get above my pain.

That, and the conversation with my feet . . . reminding them of our good times, telling them I will take good care of them and continue to love them . . .and asking them to let me still eke out some fun in my days here on Earth.

This is a self-portrait I did in colored pencil of me coming down after my attempt to summit Mt. Rainier almost 15 years ago. Now, since I no longer can work, I have returned to art to keep me feeling productive. but even that suffers when I am in great pain . . .

[Dmom3005]

My tylenol with codeine is working pretty good right now.

But at times its very painful. I do know that I have it at least.

Hoping you have found some answers.

Donna

[Peter B]

Originally Posted by Dmom3005

My tylenol with codeine is working pretty good right now.

Donna

I find this combination works where the tramadol doesn't.
They say Tramadol isn't addictive, so it is my principal pain med.
But I need the codeine for stubborn pain.
My GP said that as long as the codeine is only enough to counteract the pain, there is no chance of addiction.
It is only when you take more than needed that addiction may develop.
The codeine is converted to morphine in the body.

[Macophile]

Originally Posted by Dmom3005

My tylenol with codeine is working pretty good right now.

But at times its very painful. I do know that I have it at least.

Hoping you have found some answers.

Donna

Thanks so much,
I have yet to have any progress made though.

[braingonebad]

I hear you, but I don't know what we're supposed to do.

I was getting tramadol - 4 per day, big woohoo. Then I went to refil and my pain clinic is gone. No warning, no referal to abother clnic, nothing. I'm out of tramadol. My pcp is out of the country for 3 weeks and can't ever get in to see neuro for 3 months.

Great.

It took me two years to develope a report with that pain doc. I hate starting over.

The thing isn't what will work for pain, but who will RX it? Why do they call it a pain clinic if they don't address our pain issues?



Why do they let us go home, appt after appt, with NOTHING? We've tried all the anti depressants. We've tried all the OTCs. Would we really keep humiliating ourselves by going back if we did not need help?

Ugh... Well, what goes around comes around. Those docs that do not help will find themselves in our shoes, and nobody will help them either, if there is any justice.